The real story about XMRV coming out today?

[currer]

I

I believe that those slides show no evidence of corruption, neglect, sloppiness, or willful wrongdoing, but I've obviously not done a very good job of explaining to others why this is so clear to me... And that's a failing on my part.

Ah Bob, its not a failing on your part. People just cant resist a good gossip on the flimsiest evidence.

 

[Angela Kennedy]

Ah Bob, its not a failing on your part. People just cant resist a good gossip on the flimsiest evidence.

Was it wonko who called this situation an internet kangaroo court?

That was spot on.

 

[floydguy]

First: Comments concerning the Chicago Tribune. When a major newspaper such as the Chicago Tribune, Washington Post, New York Times etc. through their investigative reporting state they have a valid and credible information, then you better believe they have done their homework or the editor would not have allowed the information to be release. Unlike the tabloids, they have journalist ethical standards which they must adhere to.

Second: Like newspapers, confidential sources come forth to provide information. They want to remain unnamed for a reason otherwise they would not come forward with information for fear of retribution. All major investigative reporters use confidential sources which are unnamed. When I state that the sources are confidential then you have to respect that otherwise too bad don't believe it. That is your prerogative. But flaming someone for making those statements is utterly ridiculous as it is standard practice within news media reporting.

I won't comment on the science but from my experience in media relations in the government this is not necessarily correct. Journalists are often extremely lazy and don't check on anything. You can hand feed them any mumbo jumbo you want. People also stay un-named because they don't want the crap they're feeding the press to come back to them or their organization.

Why are you so intent on burning Mikovits at the stake so fast? Personally, I am happy to see what the response is and go from there. I don't need to hear all the details before they emerge from some "unknown" source on the internet who has lord knows what agenda. What would be more helpful is to outline what direction you think research might head and what you think is most promising.

 

[currer]

Ecoclimber, I met Dr Mikovits at a conference, and I really cannot associate the person I met and the presentation she gave with your previous post and the allegations it contains.

As Dr Mikovits is not here to defend herself please can we leave out the personalising statements?

I defended you on this forum once because I felt that you had been unfairly bullied on the other forum. I am still sorry that you had that nasty experience, which was quite unjust. But I also get the feeling that you are quite ill, and that you may need more rest. You sound very stressed. It could be that your perceptions are being influenced by your ill-health. Things may not be as bad as they seem to you at the moment. Best wishes.

 

[leela]

http://news.sciencemag.org/scienceinsider/2011/10/xmrv-researcher-fired.html

The Ottawa slide supported Mikovits's contention that even if XMRV could not be detected in CFS patients, other gammaretroviruses still lurked in their chromosomes. Mikovits described how she had treated cells from two CFS patients with a chemical, 5-Azacytidine, that takes methyl groups off DNA. This procedure prods cells that harbor latent versions of retroviruses to produce them, and the image on the slide showed the resultant proteins in what's known as a Western blot gel. In Lombardi et al. what appears to be the same image shows "XMRV proteins" and makes no mention of 5-Azacytidine use.

Mikovits's collaborator, Francis Ruscetti of the National Cancer Institute (NCI) in Frederick, Maryland, who ran all of the Western blots, confirms that the Ottawa slide uses the same image that appears in Lombardi et al. Ruscetti and Mikovits, in a joint e-mail to Science for this article, said many patients and their doctor, Daniel Peterson (who since has had a falling out with WPI), knew the original coded numbers, so the researchers changed them for the Science publication to "protect the patient privacy." Ruscetti says it was a mistake for Mikovits to have used the original patient codes in Ottawa. "We were under so much pressure, we missed it," says Ruscetti.

As far as the use of 5-Azacytidine, Ruscetti and Mikovits stressed in their e-mail that "there was no attempt in the original paper to hide anything." They say for the purposes of Lombardi et al., the use of 5-Azacytidine was not germane: They were simply trying to demonstrate that CFS patients had viral proteins not seen in controls. By the time of the Ottawa meeting, they say they realized that this experiment did not in fact show XMRV but proteins from a broader family of gammaretroviruses.

 

[Ecoclimber]

My statements are based on fact and substance not emotional allegations as some have accused me of. Each statement that I made can be substantiated and backed up by Power Point Slides, video and audio statements made by the WPI and Mikivots at conferences and other presentations over the last two years and not on emotional allegations made by others. When you can make direct quotes and others state that it is an emotional allegation, I wonder where their minds are at.

As to major news organizations, they are required by both ethical and journalistic standards established within those new organization especially among investigative reports to verify and substantiate their statements within their articles. Bob Woodward of the Washington Post in All The President's Men should give you a glimpse into the organization of major news media outlets

"Mikovits's collaborator, Francis Ruscetti of the National Cancer Institute (NCI) in Frederick, Maryland, who ran all of the Western blots, confirms that the Ottawa slide uses the same image that appears in Lombardi et al."

Apologies Anyone? Hello Apologies Anyone? There is still more out there.

Was I wrong? SOC? Angela Kennedy, Bob, Hello? Unsubstantiated rumors? Unsubstantiated sources? Was I accused of? Apologies anyone? I'm waiting...crickets....

Eco

 

[leela]

"Mikovits's collaborator, Francis Ruscetti of the National Cancer Institute (NCI) in Frederick, Maryland, who ran all of the Western blots, confirms that the Ottawa slide uses the same image that appears in Lombardi et al."
Apologies Anyone? Hello Apologies Anyone?

Was I wrong? Unsubstantiated rumors? Unsubstantiated sources? Was I accused of? Apologies anyone? I'm waiting...crickets....

and the whole of that sentence you just truncated and cherry-picked goes like this:

Mikovits's collaborator, Francis Ruscetti of the National Cancer Institute (NCI) in Frederick, Maryland, who ran all of the Western blots, confirms that the Ottawa slide uses the same image that appears in Lombardi et al. Ruscetti and Mikovits, in a joint e-mail to Science for this article, said many patients and their doctor, Daniel Peterson (who since has had a falling out with WPI), knew the original coded numbers, so the researchers changed them for the Science publication to "protect the patient privacy." Ruscetti says it was a mistake for Mikovits to have used the original patient codes in Ottawa. "We were under so much pressure, we missed it," says Ruscetti.

So yes, the slide was the same. But no, it was not fraud.

 

[floydguy]

Crickets chirping...

You miss the point. This topic is emotional to you, not necessarily your responses. You seem determined to be right and have it all end. For many of us, it is what is and we'll go from there when it all sorts out. I don't think any of us can do much at this point to change it. I certainly don't need to make any final decisions tonight on what I think about the WPI, Mikovits, etc. I eagerly await their responses.

On the topic of the press, you do realize that the major media organization no longer function like they did 30 years ago. Where there was Bob Woodward there are now food reporters serving as "investigative" journalists.

Crickets still chirping...

 

[Ecoclimber]

Wow, You get that from the quote about...shakes head.

 

[Ecoclimber]

Crickets chirping...

You miss the point. This topic is emotional to you, not necessarily your responses. You seem determined to be right and have it all end. For many of us, it is what is and we'll go from there when it all sorts out. I don't think any of us can do much at this point to change it. I certainly don't need to make any final decisions tonight on what I think about the WPI, Mikovits, etc. I eagerly await their responses.

On the topic of the press, you do realize that the major media organization no longer function like they did 30 years ago. Where there was Bob Woodward there are now food reporters serving as "investigative" journalists.

Crickets still chirping...

It still does not negate the fact that if the information in the article is based on real facts and evidence, it shouldn't be discarded because she once was a food critic. Apparently, it does for some.

Eco

 

[Ecoclimber]

Read it made no sense and can be easily refuted. My statements were not based on rumors which you accused me of when I held the originals files and communicated with the source of the information verifying the information myself.

Eco

 

[floydguy]

It still does not negate the fact that if the information in the article is based on real facts and evidence, it shouldn't be discarded because she once was a food critic. Apparently, it does for some.

Eco

You really shouldn't believe everything you read. Reporting one "fact" - even if it's entirely true - does not always reflect the true reality.

 

[Wonko]

TBH it doesnt concern me greatly if they (JM and the WPI) are right or wrong. What matters is they have taken us seriously and TRIED. If they are wrong so be it, the simple (or not so simple) attempt means a great deal to me. These people have put their careers on the line for pwME and that matters. Even if they are completely wrong and have been all along they have still tried and risked for us. To see people accusing them of fraud on the basis of whats been released so far and a sustained hate campaign against them is simply wrong.

 

[Phoenix Rising Team]

Thread reopened after extensive moderation clean up. Take deep breaths before posting, everyone.

If in doubt, refer to the Phoenix Rising forum rules, located here: http://forums.phoenixrising.me/misc.php?do=showrules

 

[Esther12]

Quote removed by moderator

However much I may disagree with the way that some patients have approached the XMRV issue, I don't think it's really fair to blame them if they have stirred up and instilled unreasonable prejudices about CFS patients in others.

There are a lot of people with CFS, it's a really difficult and confusing illness, and lots of patients get treated really badly because of it - it's inevitable that some of us are going to end up acting badly. If some researchers try to use that as an excuse for their own prejudices, or as a reason to form a view about CFS as a condition, then I think that's their fault, and the responsibility lies with them.

I'm going to go on disagreeing with those patients I think are wrong, and blaming them for their own behaviour, but it seems unfair to burden already struggling patients with responsibility for the unreasonable responses of others.

 

[Ecoclimber]

One more thing. The reason why I said what I did is the fact that it will be near impossible to find a researcher in retrovirolgy that will look at this illness nor will I have the ability to raise funding for this illness because of the controversy and discordance within this community. For those who have employed this strategy mentioned in my above post. You may have won the battle but you lost the war. No, I don't feel triumphant when I expended so much time, energy and effort to this cause only to watch it go down the drain. I saw the two trains approaching from opposite directions awhile back and watched as if in slow motion as they collided . I am very, very sad.

"that researchers who abandon CFS based on the behavior of a few are unethical." No they are just human and should be treated with all due respect and civility. They are not required to research this illness for those in private research so I don't know where this sense of entitlement comes from? Government researchers are a different story.

Eco

 

[Wonko]

I dont disagree with Eco's conclusion, I do disagree with his reasoning and attribution of blame. If it had any merit then the psyche lobby would immediately stop all their "research" and refuse to have anything to do with us. Peopel quite simply dont care about the opinions of people they havent met who have no influence on their lives. ME patients have no influence on the lives of retrovirologists so it's unlikely they care enough about the opinions of some of us to alter their research goals. what woudl alter those goals is teh opinion of someone who can influence their lifes - which as I've said above is probably none of us.

edit - tho of course the obvious counterpoint to that arguement is why am I bothering to point this out to someone who I havent met and has no influence on my life lol

 

[Ecoclimber]

However much I may disagree with the way that some patients have approached the XMRV issue, I don't think it's really fair to blame them if they have stirred up and instilled unreasonable prejudices about CFS patients in others.

There are a lot of people with CFS, it's a really difficult and confusing illness, and lots of patients get treated really badly because of it - it's inevitable that some of us are going to end up acting badly. If some researchers try to use that as an excuse for their own prejudices, or as a reason to form a view about CFS as a condition, then I think that's their fault, and the responsibility lies with them.

I'm going to go on disagreeing with those patients I think are wrong, and blaming them for their own behaviour, but it seems unfair to burden already struggling patients with responsibility for the unreasonable responses of others.

My sentiments exactly but that is the way it was reported to me and when I raised your very point Ester, I soon realized I was not getting anywhere. It was a done deal, a consensus had from in the minds of the group. These unfortunately, are the cards we are dealt with.

I do disagree on the responsibility of the patient community because their actions played right into the hands of the psych community. Unlike HIV and Aids, this illness came with the label of a psycho-somatic disorder from the get go so we were fighting an uphill battle from the very beginning to dissuade that false belief within the scientific community. So some responsibility belong to us that we behaved in a manner and conducted ourselves in such a way that it wouldn't enforce those beliefs.

Unfortunately, we failed miserable. Look at all the infighting among the various organizations and advocacy groups that represent us to give you a prime example. The seeds of discord and disharmony were sown very on when the Science article on XMRV was first published. I'm for WPI Blah, Blah Blah, I'm for CAA, I'm for Pandora, Don't support the CAA, Don't support Pandora, they are the enemy. Yea for Klimas, Singh, Peterson, Bateman, then Boo for Klimas, Singh Peterson, Bateman, Miller etc. You get my drift. Sorry, I've hadn't much sleep over the past few days so I hope this all makes sense.

Bye,
Eco

 

[Bob]

One more thing. The reason why I said what I did is the fact that it will be near impossible to find a researcher in retrovirolgy that will look at this illness nor will I have the ability to raise funding for this illness because of the controversy and discordance within this community. For those who have employed this strategy mentioned in my above post. You may have won the battle but you lost the war. No, I don't feel triumphant when I expended so much time, energy and effort to this cause only to watch it go down the drain. I saw the two trains approaching from opposite directions awhile back and watched as if in slow motion as they collided . I am very, very sad.

Well, I don't entirely buy into your portrait of the researcher/patient dynamic.
Especially as both Lipkin and Alter seem to be continuing their CFS research, and seem to be very interested in it.
Although I do agree that researchers will probably think carefully before becoming involved in such a controversial field. But this is nothing new.
And, personally, I would not lay the blame for the controversy on the patients.

I guess the question that we need to ask ourselves is "where do we go from here as a patient community?"
It would be nice if our community could pull together in the same direction, and fight with each other instead of against each other.
But I'm not sure that this will ever happen until a reliable biomarker is found.

It seems strange that the XMRV issue was so divisive for us all.
I had imagined that it would be something that would pull us all together, not tear us all apart.

Maybe you should have found out exactly what patients wanted, before you got involved in research and funding?
I can't see the point in planning research that patients aren't going to be happy with, and then blaming the patients when the researchers pull out.
That does seem like a rather back to front way of doing things.

 

[Esther12]

My sentiments exactly but that is the way it was reported to me and when I raised your very point Ester, I soon realized I was not getting anywhere. It was done deal, a consensus in the minds of the group.

Eco

Ah well. People are people, and it's best not to be too surprised when they act poorly. It's just a bit of a shame being stuck in a position of weakness, and being so often at the mercy of the unreasonable views of others.

It is frustrating when people will not listen to a reasonable argument. The uncertainty of CFS does seem to breed unreasonable beliefs - apparently our minds really struggle with uncertainty, and are easily drawn towards adopting and becoming attached to an assumption. It's particularly problematic when the minds of different groups are drawn to different assumptions, and one group has power or authority over the other.

I'm gradually coming to terms with the fact that we're not going to be able to change this through discussion or debate. Thanks to you, and everyone else, who has a go.